Pancreatic insufficiency ..No cause ?

Posted by hopethereisnothing @hopethereisnothing, May 16, 2023

I wonder if anyone has been diagnosed with pancreatic insufficiency, withput having pancreatitis or any other organic pancreatic disease ..does it happen ?

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I was diagnosed at 51. 2 elastase tests were 136 & 76. Abdomen MRI all clear (TG!). I average 6-7 Zenpep pills (25,000 USP) daily. With no other related issues, I am asking doctors to run additional testing. I will have a vitamin panel done for A, D, E, K + amylase and lipase.

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I started having severe diarrhea last September after a bout of food poisoning. In the course of identifying what was going on, my pancreatic elastase tested severely low at 34. I was also diagnosed with microscopic colitis and an abdominal CT showed some pancreatic abnormality but nothing to cause concern. I have never had pancreatitis or any other pancreatic disorders. I'm on Creon for the low pancreatic enzymes and it has been great - I suspect I have had low enzymes for years and the colitis just brought it all to a head.

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A year ago, after months of testing, I was diagnosed with EPI and my enzyme reading was 129. I take CREON with every meal and what a difference that has made. I lost 40 pounds and am also pre-diabetic, so it is difficult to gain/maintain weight while following a low carb diet. My search began with a vague pain in the upper right quadrant in the liver/pancreas area. Ultrasound, MRI, MRI with contrast finally showed atrophied pancreas. Because my symptoms were not daily, or even weekly and weren't dramatic, I had to stay with this, as every test came back negative, but I knew something was wrong. Finally, the stool test (last test I had) showed reduced enzymes and I started on the road to managing this disorder . I count my blessings, as this diagnosis could have been much worse and the stress and anxiety of awaiting test results was horrible. If you know something is wrong with your body find a doctor who will work with you until you find what it is. I don't think this disorder is common, so it isn't a "go to" diagnosis such as common gallbladder or stomach issues. Good luck with your treatment and diet. I now cook almost all my food and I'm better for it. Eating out is an occasional thing and my beloved sugar is a thing of the past.

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I’m 65, and was diagnosed with EPI after suffering with occasional bouts for about 1 1/2 years. I was put on ZENPEP in Nov. and was doing ok for a while. Over the past month I’ve been getting worse again. In the past 7 months I have lost 60 lbs. I don’t mind that because I was over 300 lbs. Not the best way to lose weight since I am also losing vital nutrients. If you have not been to your doctor, make sure you get a colonosopy and endoscopy to rule out Crohns. My sister has Crohns and the symptoms are almost identical.
My doctor also said nothing other than to take 2 pills before each meal. Tonight I tried taking 1 at the beginning of the meal and one at the end of the meal to see if this helps. I do feel better tonight. I generally only eat 1 meal a day, maybe 2 if I get hungry. Most of the time I am too tired and in pain to eat more than that.
I do have a question for anyone - does anyone else get chills easily after a bout? I take iron twice a day because of anemia, but I’ve been great for the past few years because of the iron. Now, once again I am cold all the time. It gets worse after a bout of diarrhea. Anyone else have this problem?

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@geegeebabe

I’m 65, and was diagnosed with EPI after suffering with occasional bouts for about 1 1/2 years. I was put on ZENPEP in Nov. and was doing ok for a while. Over the past month I’ve been getting worse again. In the past 7 months I have lost 60 lbs. I don’t mind that because I was over 300 lbs. Not the best way to lose weight since I am also losing vital nutrients. If you have not been to your doctor, make sure you get a colonosopy and endoscopy to rule out Crohns. My sister has Crohns and the symptoms are almost identical.
My doctor also said nothing other than to take 2 pills before each meal. Tonight I tried taking 1 at the beginning of the meal and one at the end of the meal to see if this helps. I do feel better tonight. I generally only eat 1 meal a day, maybe 2 if I get hungry. Most of the time I am too tired and in pain to eat more than that.
I do have a question for anyone - does anyone else get chills easily after a bout? I take iron twice a day because of anemia, but I’ve been great for the past few years because of the iron. Now, once again I am cold all the time. It gets worse after a bout of diarrhea. Anyone else have this problem?

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I was diagnosed with EPI six months ago, extremely low lipase. The Zenpep worked wonders but because of the expense I began a search for a pancreatic enzyme with similar ingredients. I am now using VITAL Nutrients Pancreatic Enzymes instead of Zenpep with no problem. $38 dollars compared to thousands. I order it from Amazon.

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